DEAR PoTS AND SVT... | DEAR CHRONIC ILLNESS LETTER

Dear Chronic Illness features a collection of short letters written by young people, addressed to their long-term illnesses and impairments, detailing what they would like to say to them. The letters are not your typical sob stories, and provide a light-hearted and humorous commentary on the writers’ various experiences, yet they also give insight into the challenges of navigating life whilst learning to live with their conditions. Share your thoughts and join in the conversation by using the hashtag #DearChronicIllness
I orginally bought this book because I saw that the lovely Grace Latter had written a letter in it. I didn't know much about it except that it addressed illnesses and impairments; something I'm very familiar with. When I opened the contents page and saw that 4 of the letters were addressed to PoTS, I wept. I've never seen PoTS talked about in a book before, so this was a huge moment for me. It's very short, but is so powerful - and I can't stress how much you need this book in your life if you have a chronic illness, or want to know more about how it feels to live with one.

The book inspired me to write my own letter, to my long-term illnesses. I never knew how I truly felt about my conditions until I did this, so it was an eye-opener, even for me.
Dear PoTS and SVT,

I feel after 7 years we're well acquainted enough to not use your full names, but there are some readers who may not know you as well as I do. For anyone wanting their full names, my friends here are called Postural Orthostatic Tachycardia Syndrome and Supraventricular Tachycardia.

I call you both my friends, because after all this time, I feel like we are. Sometimes we get along, sometimes we fight, sometimes you both fight; but ultimately, we're all in this together, and I couldn't imagine life without you both now. I'm not sure I remember how to live life without you.

SVT, when we met at aged 17, I was terrified of you. My heart rate was 250bpm when we were taken together in an ambulance for the first time. A few months later I had my first ablation and they tried to burn you away. My chest ached for weeks after they tried to get rid of you the first time - but you weren't giving up. You weren't ready to let me go. When I was 20, they tried to burn you away for a second time - I was on the operating table for 4 hours that time. But you were as persistent as ever. They asked me if I wanted to hurt you for a third time - I declined. You slotted into my life now. I was used to you. We were friends.

PoTS. Oh, PoTS. I'd just become friends with SVT and at aged 20, you joined us. After the fainting, the dizziness, the sweating, the palpitations - I knew something wasn't right, but I didn't know it was you. After years of waiting for a diagnosis, I welcomed you with open arms. You had a name. We could get rid of you now. Hallelujah. Except, we couldn't. We tried lifestyle changes, dietary changes, tablets, exercise - but much like SVT, you were having none of it. You rejected all of my attempts. But you weren't like SVT. When you came to visit, I couldn't work. I couldn't socialise. Sometimes, we'd just lay in bed all day. I hated you. For 3 long years I fought and fought to stop you taking over my life. You weren't welcome in my body, and I wanted you to know that. But then April 2017 came. You left me bedridden. I gave up. I let you in, entirely. We visited the National Hospital of Neurology and Neurosurgery and they let me see you in a light I've never seen you before. I couldn't push you away any more; just like SVT, you were a part of me.

You've undoubtedly changed my life in more ways than I could have ever imagined. I lost friends, my livelihood, the career I'd worked for years on, and sometimes even my mind. But what you've given me? Well, that is so much more. You strengthened my family ties; you showed me who my real friends were; you helped me foster a career in books that I never thought possible; whether I liked it or not, you helped shape me.

Yes, my teenage years were lonely. And I rarely went out with friends, or went out drinking, or sometimes even left my bed, but that's okay now. I understand. I was adapting. I was getting used to you both being with me. I try not to fight you any more (don't look at me like that PoTS, I said try). If you want to sleep, I sleep for you. If you want to rest, I rest for you. I walk hand in hand with both of you now, and I'm proud to call you both my friends.

PoTS, you sometimes leave people in their mid-twenties. I'm 24 now. I'm really quite scared. What if I wake up one day and you're no longer there? Or over the months, you slowly leave me, so it's a long, painful goodbye? When we first met, I was terrified that you were here. Now I'm terrified that you'll go. How do I live my adult life without you? I've never known any different. I suppose it's best not to worry about that now though.

I never thought I'd be in a place where I'd thank you both. But I am. This is a good day though, and we all know they don't come very often. Maybe you guys knew what I was doing and made sure you were on your best behaviour. But honestly? Thank you. Thank you for showing me how to live with you. Thank you for being there when no one else was. Thank you for showing me how wonderful life can be with you both in my life. However long we have left together, thank you.